By Judy Parkinson
Experience what dementia might be like! It says on the side of the bus. I run Drawing Life – drawing classes for people who live with dementia. Naturally I do my best to communicate with people at my classes in a kind and understanding way, and if I can do better so much the better. When Hastings Court Care Home, where I teach, invited me on a virtual dementia bus tour I booked a place – I have to say, with some trepidation. Here was a chance for me to step into the shoes of people who live with dementia. I was prepared to go on a trip somewhere out of my mind and my comfort zone, but how far I could not have imagined. It soon became clear the bus wasn’t actually going anywhere, but I was – in body and mind.
Our tour guide is a surly man dressed in black without a name or any manners. He doesn’t say hello or ask my name. Not the right kind of guy for a people-facing job I think, but go along with it anyway. He barks orders. Sit down. Put these in your shoes, spiky side up. Give me your hand, put this plastic glove on. I’ll put the chunky one on top. Other hand. Take your glasses off. Give them to me. Goggles on first, then head phones. He guided me into the bus. No turning back. Destination unknown.
It’s dark. I can’t see. Maybe I can, but not much. Noise. Loud. Coloured lights flashing. Words. Tinnitus. Voices. The floor moves. Must not fall over. Noise. Static. A shadow moves. Radio. He growls at me. I can’t hear. Words. What do I do? Pins and needles. Buzzing. Woolly fingertips. Sirens. Voices. Noise. Panic. Dark. Someone behind me. Speaking. Do something useful. Where? Is that a hole? I dropped the cup. Dark shadow. That man. Behind me. What’s he saying? Match the socks on the bed. Why? What did he say? Alarm. Where’s the bed? Is it clean? I can’t feel it. Can’t find any socks. Is that a toilet? My feet hurt. Dizzy. I don’t feel safe. Can I sit down? Where are the others? Door slams. Bang. Bang. Everything at the wrong angle. Loud. Voices. Traffic. Urgent. Something bad is happening. I sit down. Then it stops. He lifts the goggles and the headphones. Someone’s crying.
Hi I’m John. He smiles. How are you? His Mr Grumpy act was devised to make you feel uncomfortable. It worked.
What did I learn? This experience has been scientifically designed by an American doctor, PK Beville, and it replicates some of the sensual assaults felt by people living with dementia. Apart from being disorientated by memory lapses, people live with feelings of susceptibility, loss of sight and speech, inability to recognize faces – even your own, dizziness, offensive noise in your head day and night, fingers that feel like marshmallow, tingling feet. You feel vulnerable, small, needing to ask permission to do the most basic things. You are obliged to trust people who help you, whether they are pleasant or downright unkind.
Even before I stepped into the bus, I allowed Mr Grumpy put the gloves, goggles and headphones on me. At that point I could easily have done those things for myself, but by then he was in control. That loss of self happened frighteningly fast. John explained afterwards that he told me a list of five tasks. I have no memory of that. I was too busy adjusting to that fearful environment inside the bus. All his other instructions were muffled and he seemed to speak too fast. I couldn’t work out if he was beside me or in front.
It was very, very dark inside the bus. The goggles act for macular degeneration, dark in the middle with limited peripheral vision. Flashing coloured lights represent the hallucinations that affect some people. Why didn’t I search for a light switch or open a curtain like I would normally? I was so distracted by the assault on my senses that any modicum of self-determination had evaporated.
The bus journey was unforgettable – I was frightened, defenseless, emotionally and sensually interfered with – all in the space of about 15 minutes. It was vital training for anyone working with the dementia community. As I write this, five days later, my feet still tingle from the spiky insoles I had to wear. No one would want to take a trip to destination dementia. But some of us will.
Thanks to: www.training2care.co.uk